Advice...help...opinions...venting!

K

Karenmichelle

Guest
I have not been on here in quite awhile, but still read posts. My son, Tyler (5 yr), is being treated as a CF patient while still searching for the genetic component. He meets all clinical criteria for it, but we are still looking for answers. He recently had a G-tube placed for FTT, and malabsorption issues (was in the hospital a few weeks, Holidays not too fun). That is going well and he has gained weight! However, he continues to have respiratory concerns...esp chronic sinus infections. He has already had them cleaned out once (that is when they found the polyps). He just cultured psuedo and they put him on Cipro. Well, he is allergic to it (and sulfa). So, they are going to try Tobi next. They have also talked about a PICC for IV abx. He also has immunity issues and they have talked about IVGA for him in the future. The cost of everything is amazing...which I am sure everyone has had to deal with. Not knowing what is going on and always getting another hit with something is frustrating (cultures, no immunity...) ...one hurdle after another. I feel so bad for my little guy. He smiles through it all! He was such a light to others at the hospital, so sad and sweet to see <img src="i/expressions/face-icon-small-smile.gif" border="0">I am so afraid we are going to "run out of" abx optionsbecause he seems to have such a high sensitivity/allergy to them. He has built up a "tolerance" to Augmentin. He is back on Azithromycin MWF, which that at one point did not seem to do too much. At a loss. So over all the diagnostic testing, though. Just trying to keep him healthy. Poor thing has been poked and prodded sooo many times!!!
So, how have your loved ones done on Tobi? What are you thoughts on IV abx therapy? Does anyone have any info for getting financial help with the cost of the Peptamen Jr. ? (We are in the process of appealing the insurance to pay, and I have not found an assistance program to help.)
Anyway, thank you for any help or advice you may have. Blessings
 
K

Karenmichelle

Guest
I have not been on here in quite awhile, but still read posts. My son, Tyler (5 yr), is being treated as a CF patient while still searching for the genetic component. He meets all clinical criteria for it, but we are still looking for answers. He recently had a G-tube placed for FTT, and malabsorption issues (was in the hospital a few weeks, Holidays not too fun). That is going well and he has gained weight! However, he continues to have respiratory concerns...esp chronic sinus infections. He has already had them cleaned out once (that is when they found the polyps). He just cultured psuedo and they put him on Cipro. Well, he is allergic to it (and sulfa). So, they are going to try Tobi next. They have also talked about a PICC for IV abx. He also has immunity issues and they have talked about IVGA for him in the future. The cost of everything is amazing...which I am sure everyone has had to deal with. Not knowing what is going on and always getting another hit with something is frustrating (cultures, no immunity...) ...one hurdle after another. I feel so bad for my little guy. He smiles through it all! He was such a light to others at the hospital, so sad and sweet to see <img src="i/expressions/face-icon-small-smile.gif" border="0">I am so afraid we are going to "run out of" abx optionsbecause he seems to have such a high sensitivity/allergy to them. He has built up a "tolerance" to Augmentin. He is back on Azithromycin MWF, which that at one point did not seem to do too much. At a loss. So over all the diagnostic testing, though. Just trying to keep him healthy. Poor thing has been poked and prodded sooo many times!!!
So, how have your loved ones done on Tobi? What are you thoughts on IV abx therapy? Does anyone have any info for getting financial help with the cost of the Peptamen Jr. ? (We are in the process of appealing the insurance to pay, and I have not found an assistance program to help.)
Anyway, thank you for any help or advice you may have. Blessings
 
M

Mom2Brinly

New member
Hi Karenmichelle-

I am so sorry to hear your battles regarding your son. I have a 7 yo with Cf and she has gone through the same trials and tribulations that your son has gone through at such a young age. It breaks my heart too because my beautiful cf girl is so full of life and yet she just can't bet or yet just get ahead of this cf thing. You look at her and she is so accepting and brave and HAPPY. She is in the hospital right now with IV antibiotics for the 4th time this year! She just got her picc line this morning. She has cultured Puesdo every culture this year and we have tried Cayston, cipro and Tobi(which has done great with) She is under weight and with this admission she will be getting a g-tube.
My daughter also has immunity issues and we have worked hard to try and bring her immune system up by supplementing her with extra vitamins and minerals. I had her blood tested for food allergies and she was allergic to corn, wheat and peanuts. I took them out of her diet for a year and her immune system is up in regards to non- cf issues. For example- we have been exposed to stomach viruses, strep and general colds etc. and she has not gotten any of them! So it was kinda good to get her basic system under control. She also had sinus surgery at age 5 and seasonal "allergies" which was actually food related. They are now gone! The cf bugs and her weight have been declining for the past couple of years. So my hope is when she has the g- tube it will make her gain weight to help her fight the big cf bugs better. I actually just can't wait to be able to put all the vitamins, probiotics, super greens etc. in the feeding tube to insure she has all her immune boosting ammo!

With our insurance we just know that we will be of pocket the cost for her every year for $2700.00 which covers both doctors and prescription drugs. We have put that money into a flexible spending plan and when she is discharged from the hospital we know we will have to pay for it upfront but then she is basically free for the entire year. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I will have to see how the peptamen will work but i am assuming it will be paid for 100% since she will be maxed out.

Please pm to vent more!! I know it is very hard to see our babies go through all of this! Have you had any issues with your sons g-tube?

Blessings- Blythe

Mom2Brinly 7yo with cf
Birgess 10 yo w/out cf
Blakelyn 5 yo w/out cf
 
M

Mom2Brinly

New member
Hi Karenmichelle-

I am so sorry to hear your battles regarding your son. I have a 7 yo with Cf and she has gone through the same trials and tribulations that your son has gone through at such a young age. It breaks my heart too because my beautiful cf girl is so full of life and yet she just can't bet or yet just get ahead of this cf thing. You look at her and she is so accepting and brave and HAPPY. She is in the hospital right now with IV antibiotics for the 4th time this year! She just got her picc line this morning. She has cultured Puesdo every culture this year and we have tried Cayston, cipro and Tobi(which has done great with) She is under weight and with this admission she will be getting a g-tube.
My daughter also has immunity issues and we have worked hard to try and bring her immune system up by supplementing her with extra vitamins and minerals. I had her blood tested for food allergies and she was allergic to corn, wheat and peanuts. I took them out of her diet for a year and her immune system is up in regards to non- cf issues. For example- we have been exposed to stomach viruses, strep and general colds etc. and she has not gotten any of them! So it was kinda good to get her basic system under control. She also had sinus surgery at age 5 and seasonal "allergies" which was actually food related. They are now gone! The cf bugs and her weight have been declining for the past couple of years. So my hope is when she has the g- tube it will make her gain weight to help her fight the big cf bugs better. I actually just can't wait to be able to put all the vitamins, probiotics, super greens etc. in the feeding tube to insure she has all her immune boosting ammo!

With our insurance we just know that we will be of pocket the cost for her every year for $2700.00 which covers both doctors and prescription drugs. We have put that money into a flexible spending plan and when she is discharged from the hospital we know we will have to pay for it upfront but then she is basically free for the entire year. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I will have to see how the peptamen will work but i am assuming it will be paid for 100% since she will be maxed out.

Please pm to vent more!! I know it is very hard to see our babies go through all of this! Have you had any issues with your sons g-tube?

Blessings- Blythe

Mom2Brinly 7yo with cf
Birgess 10 yo w/out cf
Blakelyn 5 yo w/out cf
 
R

Ratatosk

Administrator
Staff member
DS started tobi when he was 3 months old. Some people have issues with broncospasm, hoarseness, but ds hasn't had issues.
 
R

Ratatosk

Administrator
Staff member
DS started tobi when he was 3 months old. Some people have issues with broncospasm, hoarseness, but ds hasn't had issues.
 
C

CJPsMom

New member
We had Tobi when our little one was 10 months old and he did fine. We did full vials, twice daily. It knocked those PA's right out!
As for the Peptamen & insurance, work the g-tube angle. Our insurance starting paying for formula as soon as he got the g-tube. Thankfully, as we're going through a can of Neocate basically every two days.
 
C

CJPsMom

New member
We had Tobi when our little one was 10 months old and he did fine. We did full vials, twice daily. It knocked those PA's right out!
As for the Peptamen & insurance, work the g-tube angle. Our insurance starting paying for formula as soon as he got the g-tube. Thankfully, as we're going through a can of Neocate basically every two days.
 
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